The Promise of Precision Therapies... Children’s Hospital of Philadelphia (CHOP) made national news and history by treating an infant with a customized gene therapy. This gives our community hope for ...

Flipsnack is a digital catalog maker that makes it easy to create, publish and share html5 flipbooks. Upload a PDF or design from scratch flyers, magazines, books and more.

Join us, as Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) unpacks the realities of working on your marriage while parenting a child with disabilities and medical complexiti...

It just keeps coming and coming... Everytime we sat down to write this newsletter and felt like we had even a small handle on everything happening, something new (and often terrible for rare epilepsie...

Feeling Helpless and Frustrated... We know we speak for many when we say we are feeling exhausted and frustrated. We have been hearing from concerned colleagues at academia, government, nonprofits and...

RALLY FOR RARE IS GOING FORWARD! Thanks to the overwhelmingly positive response from all of you, we are moving forward with a community-led #RareDiseaseDay… | 17 comments on LinkedIn

Explore caregiving’s economic challenges and their impact on patients, families, and the broader healthcare system. This interactive workshop will provide actionable insights for researchers, patients...

The Rare Epilepsy Network (REN)'s mission is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy

REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and other partners. These Walt Whitman High School interns have made s...

The Rare Epilepsy Network (REN)'s mission is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy